TY - JOUR
T1 - Co-producing research with people impacted by dementia and service providers
T2 - issues and challenges
AU - Gaffy, Ellen
AU - Brijnath, Bianca
AU - Dow, Briony
N1 - Funding Information:
Funding for the PITCH project was received through a competitive government grant. Ideally, co-production methods should be used to collectively determine the research priorities and the research agenda. But such an approach can conflict with funding body requirements for study designs to be clearly outlined at the time of funding application. Additionally, outcomes often need to be anticipated at the time of the funding application to present a case for the significance of the research. In short, while funders need specificity – i.e. to know what they are funding – and researchers need to be accountable for the public monies they have been granted, where does that leave consumer input into the research design process? Co-production can increase the accountability and transparency of the research process and outcomes through public involvement. The public has a right to be involved in and influence how public funds are spent14, including determining research priorities and setting the research agenda. During the development of the grant application for PITCH, a carer advisor who had extensive experience supporting someone living with dementia was consulted on the design of the study. This engagement resulted from an established relationship between the carer advisor and the research organisation. However, it may not always be possible to engage and source payment for consumer advisors at the research design stage, particularly if the project is reliant on securing project-specific funding to provide consumer remuneration. Junior researchers who may not have developed relationships with consumers or have the funds to fairly remunerate consumers for their time may be particularly disadvantaged. Moreover, given the overall low success rates in research funding, the long lead times between funding submissions and notification of outcomes, and the prerequisite legal agreements and project establishment needed before data collection can commence, careful thought must be given to enlisting consumers to extensively input into funding applications as this risks burdening already overstretched end-users.
Publisher Copyright:
© 2022 Gaffy et al.
PY - 2022/6
Y1 - 2022/6
N2 - Background/objective: Co-production is a collaborative method that can make the research process more egalitarian by ensuring researchers work in partnership with key stakeholders in both the design and delivery of research projects and outcomes. A departure from more traditional ways of conducting research, co-production requires the researcher to reflect on their role in the co-production partnership. However, academic research projects are often constrained by parameters set by funding bodies, ethics committees and the researchers themselves.This raises questions about whether some of the key tenets of co-production, including equally shared power, control and responsibility, can be achieved in a meaningful way. This paper presents some of the issues and challenges faced by researchers in achieving shared power when utilising co-production methodology in academic settings. Type of program or service: The application of co-production within an academic research project is illustrated by a case study involving coproduction with family carers, people living with dementia and service providers to develop dementia-specific training for home care workers. Results: There were unavoidable external constraints on sharing power and decision making within some elements of this project. Project parameters, including the research topic, timelines and funds available, were set by the funding body. Similarly, the study objectives and methods involving participants were required to be predetermined for ethical review. Power was redistributed by shifting the power dynamic in various ways within the internal project environment. Researchers developed strong relationships and built trust with key stakeholders, maintained consistent communication, negotiated conflict, ensured each stakeholder voice was heard and supported people living with dementia to be involved safely and comfortably. Lessons learnt: Funding body requirements, ethical governance and researcher responsibilities can limit power sharing and decision making when using co-production in academic contexts. Although the researcher or research organisation may hold ultimate responsibility for the overall management and delivery of the project, power can still be ceded and redistributed at many points within the project.
AB - Background/objective: Co-production is a collaborative method that can make the research process more egalitarian by ensuring researchers work in partnership with key stakeholders in both the design and delivery of research projects and outcomes. A departure from more traditional ways of conducting research, co-production requires the researcher to reflect on their role in the co-production partnership. However, academic research projects are often constrained by parameters set by funding bodies, ethics committees and the researchers themselves.This raises questions about whether some of the key tenets of co-production, including equally shared power, control and responsibility, can be achieved in a meaningful way. This paper presents some of the issues and challenges faced by researchers in achieving shared power when utilising co-production methodology in academic settings. Type of program or service: The application of co-production within an academic research project is illustrated by a case study involving coproduction with family carers, people living with dementia and service providers to develop dementia-specific training for home care workers. Results: There were unavoidable external constraints on sharing power and decision making within some elements of this project. Project parameters, including the research topic, timelines and funds available, were set by the funding body. Similarly, the study objectives and methods involving participants were required to be predetermined for ethical review. Power was redistributed by shifting the power dynamic in various ways within the internal project environment. Researchers developed strong relationships and built trust with key stakeholders, maintained consistent communication, negotiated conflict, ensured each stakeholder voice was heard and supported people living with dementia to be involved safely and comfortably. Lessons learnt: Funding body requirements, ethical governance and researcher responsibilities can limit power sharing and decision making when using co-production in academic contexts. Although the researcher or research organisation may hold ultimate responsibility for the overall management and delivery of the project, power can still be ceded and redistributed at many points within the project.
UR - http://www.scopus.com/inward/record.url?scp=85132079934&partnerID=8YFLogxK
U2 - 10.17061/PHRP3222216
DO - 10.17061/PHRP3222216
M3 - Article
C2 - 35702749
AN - SCOPUS:85132079934
SN - 2204-2091
VL - 32
JO - Public Health Research and Practice
JF - Public Health Research and Practice
IS - 2
M1 - e3222216
ER -